Listening to people with lived experience to shape our new research priority setting project

Jessica Bush, Marie Curie’s Public Involvement and Engagement Manager, updates us on the project to update the Palliative and end of life care PSP:

Well, here we are again! Marie Curie is once again collaborating with the James Lind Alliance (JLA) on our latest Priority Setting Partnership (PSP) – the Palliative and End of Life Care Research Priorities Project.

A similar project was published in 2015, which identified a list of the Top 10 priorities for research in this area. Much has changed since 2015; research on some of the identified priorities has been undertaken and we have all been affected by the Covid-19 pandemic, in different ways. The time was right to repeat the prioritisation process and hear from people living with a serious life-limiting illness, their family and friends, people who have been bereaved and the health and social care professionals involved in their care. The result will be to refresh the priorities for palliative and end of life care research and help generate the biggest possible impact on experiences towards the end of life.

This time, Marie Curie was committed to strengthening the involvement of people with lived experience throughout the project, ensuring that our PSP has people at its heart and remains centred on people who will ultimately benefit from the work.

We based the involvement on a successful model used for the research that Marie Curie collaborated on with the UK Commission on Bereavement. The team working on this project created a Lived Experience Advisory Forum (LEAF) from the outset.

As Marie Curie’s Public Involvement and Engagement Manager for research and policy for the last year and a half, I had the privilege of recruiting people to our Lived Experience Group (LEG).

We now have a group of 18 very engaged members with a range of lived experience including living with a life-limiting illness, caring for someone with a life-limiting illness and of bereavement. There are members from the four nations of the UK and good diversity in terms of recency of experience, gender, age, sexual orientation and ethnicity.

It’s no easy task to recruit people to be involved, and I had to be creative in finding fruitful avenues. These included a range of internal Marie Curie channels such as our volunteers, our existing Research Voices Group and our research newsletters, as well as a range of external groups including the Charities Research Involvement Group, Tenovus Cancer Care All-Wales Cancer Community, the Scottish Network for Acute Palliative Care and The All Ireland Institute of Hospice and Palliative Care. I am so grateful for all those who supported Marie Curie to spread the word and bring people on board who we might not traditionally reach.

I spoke one-to-one with everyone who expressed an interest in getting involved. Everyone was so willing to share their stories with me, both positive, negative and sometimes emotional, and it’s so important to make a connection with people. Universally, people want to make a difference for others, whatever their own experiences are or have been.

“I have lived experience as a bereaved family member and also currently caring for a family member with a terminal illness. I am passionate about the importance of good palliative and end of life care, and how research can improve this.”   LEG member

To date, the LEG has met four times and also contributed via email. Their involvement and insight have already had a positive impact including:

• Feedback on the first draft survey resulting in changes to the wording of the key research question, definitions of palliative and end of life care, and to the demographic questions

• Helping us to design our project communications

• Piloting the first survey

• Contributing to promotion of the survey by sharing with local networks and communities

Feedback from the LEG is shared with the project Steering Group and four members of the LEG sit on the Group to ensure that their voices are represented and that the project remains grounded in lived experience.

We’re evaluating the involvement of the LEG using the Public Involvement in Research Toolkit (PIRIT) which, in line with the UK Standards for Public Involvement, will help us to ‘assess the changes, benefits and learning gained from the insights and experiences of patients, carers and the public.’
It’s been a privilege to get to know this fantastic group of people and to see their involvement really making a difference. Roll on the next meeting!

Please visit the project website for more information about our PSP and to complete our survey.

Thanks Jessica Bush (@JessicaMBush) for updating us